What am I going to do? I ask myself this all the time. I preach to others, "Don't let this disease dictate your daily life,” all while knowing it does just that.
Why? Because there are no breaks. None for the patient, and very few—if any—for the caregiver.
I just wish there was a two-hour window some days where I didn't have to deal with this disease; A couple of hours where things could be normal again.
There is so much time each day that I waste looking for something that is right in front of me, but I’m unable to recognize it for whatever reason. I waste time going from one room of the house to another without any idea of what I am wanting to do or even retrieve when I get there.
We frequently hear about medical trials for this disease and that disease. If you believe everything you read or see on TV, you would think a cure is right around the corner, but alas...
I'll tell you what I would be satisfied with. If someone, someday, would just come out with something that could make my day tolerable.
I'm not asking for a perfect day, just a tolerable one. I take a whole handful of pills twice each day to do just that, but things are not bearable. They really aren't.
The only thing these drugs do is make it so I really don't care that things are unendurable. And, for the most part, they do a lousy job at even that.
When people ask me, "How are you doing?" I simply say, "I'm thankful.”
Because I am.
However, being thankful has its limits. I am thankful for what I have and what I can still do. One day I will not complain about my memory loss, for I won't be able to anymore. I will lose all ability to communicate.
But, I wonder, will I still try to communicate? Will anyone around me be able to understand me if I am trying to say I am in pain?
There have been horrible diseases around since the beginning of time, but dementia is an incomparable disease.
I feel for the caregivers. They are my heroes. I know what I go through personally, and it must be terrible having to watch a person suffer with this disease and not be able to anything about it.
You won't find many days where I am steeped in self-pity. I almost always have something good to say about everything. There is always a bright side, if one just looks hard enough.
But I have been looking for one for over 10 years now. If, by chance, I would find a bright side, it is likely that I would no longer be able to recognize or remember it on any given day.
This is dementia, and I am so, so sick of it. Today, especially.